Today is my 11th cake day – the 11th anniversary of the day my MS started. I choose to celebrate it, by eating cake, and taking the time to look back over the past year.
This year has certainly not been the average year with MS, if any of the years have been average. You will notice that there has been a big gap in my posts to my blog, for a very good reason. In January Ian died from esophageal cancer, 18 months after his diagnosis. He never got to have those remission celebrations that some people who have had cancer get to have, but he certainly lived those 18 months in style and at full speed. I miss him every day in ways that no words could ever describe. I turn to tell him things daily, and regularly think I hear him coming in through the front door when I’m in bed in the afternoon. And, I hear his eyes rolling at me for some of the things I’ve done since he’s gone.
January was awful in many ways. My dearest friend’s mum died too, just 13 days before Ian, and we lost a cousin and dear friend too, all in the space of 15 days. The rest of 2019 did its best to stamp itself on life in many tough ways, not least with my mum’s stroke, but, as ever, I am determined to look for the positive and see the learning that has happened this year.
So, heres’s some things I’ve learnt.
I’ve learnt my limits even more clearly. While my body continues to remind me when I must stop, I continue to push my boundaries. I’ve learnt to add as much technology into my house as I can, because sometimes even not having to reach for a light switch can be a relief.
I’ve re-learnt what I like to eat. It sounds odd, but when you live with someone else you compromise, and particularly with Ian’s inability to eat certain things, there were more compromises than usual in recent times. So, now I eat what I want, when I want. And boy it is good!
I’ve learnt when I need assistance, and what for, and what I don’t need assistance for, and that I can live on my own really successfully. I’ve learnt that the big cast of people who support me are wonderful, generous and bring joy into my life, and it’s good to enjoy their company. And some people, well one person, is simply incredible and there are no words to describe the support she gives me.
I’ve learnt and tested out the ways that the furkids and I live together. We’re gradually getting more manners. Lacey continues to try to impose routines on me I don’t want, while Deefer finds new ways to need hugs. They’ve certainly given me untold support and love, and our bond is something I cherish.
I’ve learnt that my family, both those who I share DNA with and those that I don’t, continue to surprise me with the ways they show their support and their love, and I am profoundly grateful.
And, I’ve learnt I love silence. Being on my own, in my own home, with no tv, music, radio, for most of every day is bliss. Read, read, read, read.
The real reason I’ve chosen learning as the theme is that my learning, in an academic vein, is continuing, as this week I begin my PhD studies. I’m learning to challenge ableism in academic institutions, to find ways to make sure I get what I need, at the times my fatigue allows it. I’m nervous and I’m excited. I can’t work out which bits I’m enjoying more at the moment – whether it’s the physical things like catching the bus and finding that the accessible toilets are not accessible, or the actual academic stuff. Anyway, whatever it is I’m enjoying, I’m definitely enjoying it! And, because of this, I’m going to try to blog my adventures as a student. Not necessarily the academic-y parts, but the other stuff.
And my MS itself? Well, it’s still there – it’s definitely not going away – but I think it’s more stable. The roller coaster the rest of my life has been on has certainly made me more fatigued but when those extreme events pass, my body slowly recovers, and the routine of 8 or 9 hours a day out of bed, some in the morning, some in the evening, continues.
In the many different readings I’ve done over this summer, I’ve read the same sentiment from a couple of disabled people who have acquired their disability, like me, rather than being born with it. They are responding to the question of whether their disability is something they regret, and whether they wish they were without it. The answers I’ve read are similar to mine, and probably will surprise or even shock people. I’m going to try to explain it in my own words. Becoming disabled has made me into a better person, I think. It’s given me the space in my life to examine life’s inequities even more clearly, and to do something about them. It’s taught me all manner of lessons, only some of which I’ve covered here – would I want to be without those experiences? It’s an intrinsic part of who I am and it’s changed me in ways that I don’t regret. I’m not saying I enjoy being in pain, or that I relish my fatigue – far from it. But disability isn’t something that requires pity, or something that necessarily changes your life for the worse. It changes your life to something different – perhaps travelling on life’s country roads rather than on its highways. You kind of get where you want to be, eventually, or maybe you get somewhere else entirely. Either way, the journey is full of life and light, joy and laughter, and appreciating that is the best lesson of all.